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American Heart Association urges infant screening be required in Kansas

March of Dimes supports approach that addresses potential problems quickly

No one wants Kansas newborns to die from treatable conditions, but advocacy groups are divided on balancing speed with thorough preparation for requiring new screenings.

The Kansas chapter of the American Heart Association contacted media Monday with concerns the Kansas Department of Health and Environment isn’t moving fast enough to ensure all babies born in Kansas are screened for potentially deadly heart defects. The March of Dimes, however, endorsed KDHE’s approach as a way to avoid missteps with a new test. Both groups are working with KDHE on the plan to increase screenings.

Everyone agrees that a test known as pulse oximetry can save lives by detecting serious heart problems in babies who may not yet show symptoms. It measures the level of oxygen in the blood without drawing any. If a baby’s blood has too little oxygen in it, the baby will require more tests to determine whether he or she has a serious heart condition, and if so, how best to treat it.

Rachel Berroth, director of KDHE’s Family Health Bureau, said about 80 percent of babies in Kansas already are screened shortly after birth, but they still need to raise awareness among rural birth centers about what level of blood oxygen is a sign of trouble, how to report abnormal results, and where to send babies who need such tests as echocardiograms.

St. Francis Health and Stormont-Vail Regional Health Center reported they screen all infants with pulse oximetry before discharging them after birth.

Berroth said KDHE is on track for close to 100 percent of newborns to be screened for heart problems by the end of 2014. The department has webinars scheduled for this spring for the rural facilities that can’t easily send staff members to a larger city, she said.

“We’re very confident we can have all of this done by the end of the year,” she said.

Kevin Walker, regional vice president of advocacy for the American Heart Association, said the group wants the state to require all hospitals that deliver babies to perform pulse oximetry screening, pointing to the story of a family from Concordia whose daughter seemed healthy for the first few weeks of her life, until she suddenly turned blue and flat-lined multiple times on the way to the hospital. The arteries in her heart were switched, preventing oxygen-rich blood from reaching most of the body. Surgery can fix the problem if it is detected in the first few days of life, but it can be fatal if not treated promptly. The girl, who is now 5 years old, has had four open-heart surgeries and takes medication twice daily, but it isn’t clear how long she can live with her heart condition.

Walker said the state can begin requiring tests now and work through issues as necessary, because babies born before the preliminary work is finished could die if their condition isn’t discovered quickly.

“Every day that we delay is another day that we’re putting babies at risk,” he said.

Diane Daldrup, state director of programs and government affairs for March of Dimes, said the Legislature will have to approve mandatory pulse oximetry screening because it isn’t included in the list of 28 conditions Kansas already screens for using blood spots from infants.

Daldrup said March of Dimes wants to see heart defect screening added to the list, but KDHE ran into problems when metabolic screening started because some hospitals didn’t have training on how to do the tests or what to do if a baby’s test was positive. Heart defect screening will be easier to implement because hospitals already have procedures for treating babies showing signs of cardiac problems, she said, but addressing potential problems before screening starts is a good move.

“They’re really relying on lessons learned from the first go-round,” she said. “KDHE’s approach has been very thoughtful.”